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Okay, I need your help. Because I do not know from personal experience; I seek your input today. It is May 2nd and families are getting ready to send their child(ren) to camp. Our kids did not attend summer camp, or by time Kaitlyn did–she did as a counselor–but it surely is a topic THAT MUST be addressed.

Kindly share your experience going to diabetes camp for the first time, or every summer; having diabetes and going to a non-diabetes camp—what tidbits can you add? Not going away to camp but a day camp—what do you know?

One of my favorite people on this living earth is Shelly Yeager. Few people have the love deep within her heart for our young people than Shelly. Her work at The Barton Camp, the Diabetes Education and Camping Association, and more recently with Young Leaders in IDF also has made her a powerhouse of knowledge. Camps can be such a huge asset to any family dealing with diabetes and Shelly taught me that over the years. The amount of education that is poured into these camps is just incredible. And…..they’re a load of fun.

You can learn a good deal by going to the site of the Diabetes Education and Camping Association (they have a camp locator by state) but I also believe that some great advice from others adding their own personal experiences will be a huge help as well.

What did your kids like about it, what did you do to get them ready, were you in contact with your kids while they were away–and how did you deal with that aspect, how can one get financial assistance in attending, did you weigh sleep-over vs. day camp????? Our friends overseas….share what you know also; where should people turn for help in your country? All just some questions that need answers and could help others.

And PLEASE feel free to tell us about a camp you love (and add their link); this is all information that people might be able to use.

Please hit reply and give your comments on this site because this article is sent and read all over and not just on the FB page you may have seen it; so please add your advice, comments, and pearls of wisdom right here for others to see.

It will happen. No matter how good we think we are, no matter how hard we work at it, there will come a time that you will need help along the way. Bet on it. If not yet, it will happen. Because everything we deal with is life, and life is every thing we deal with on a daily basis.

I have included a video today (I like to do that) and it is only about two minutes long. It is one of the ultimate situations when someone accepts help from a an incredibly unexpected source. It is a reflection of how the human spirit should be in dealing with one another.

Let it serve as a reminder of two things. One, that people can surprise you at any given time and two, when someone offers you help………take it. Because sometimes a helping hand is there, but we just don’t notice it.

I saw this video a few years ago. interesting that participants are long graduated into life, but on this day, on this date in time; they created something that they will never forget; a lesson for all of us.

Click the picture above to see a short video of one incredible group of young ladies.

You know, the amount of times that you pick it up and it feels like a million pounds. The weight of calling a loved one to deliver the bad news You remember it; “Mom, Dad, we are at the hospital, she has type one diabetes.” Or the call with even worse news. Remember those?

Well today I am reminding you to remember the opposite occasions. The times you were so excited that you could not dial the phone. You were smiling so hard that your face hurt. You were giddy, a song in your heart; the earth could not be more beautiful. Cell phone or old-time-rotary phone, it did not matter—–you oozed joy.

Today is such a reminder of such a day. Our first-born arrived 27 years ago this date. Thomas James entered the world and our lives would be enriched and changed forever. A father could not be prouder of his kids, and each of ours has incredible strengths.

I have often stated that my kids are far from perfect, just like their dad. But they provide us with such incredible joy. We always look to teach our children, to be the mentor; many times—-they teach us.

My son is fiercely dedicated. If you are not his friend, you’ll know that but if you are, he will be there for you at every turn. He has taught me the meaning of absolute friendship. He has a group of guys and girls that have a bond of which I have never experienced before. Most are in the fire department with him, perhaps that has something to do with it.

They are as silly as they are serious and they enjoy each other beyond measure. I truly love TJ’s friends. “Hey Mr. K”, is the sound I love to hear from them each time I see them.

He has a very protective side to him as well. He has, on more than one occasion, stood up for others and his family in ways that one would need to experience to fully understand; rather than me try to explain.

I, me, personally never owned a pet until I was a father; and watching TJ’s love for animals has taught me a great deal. Why, me the man who would never own a dog, now has two.

I have written many times about the way TJ and his colleagues approach firefighting. He was part of a group that I will always call “Tony’s boys”—a mentor who once said to me, “Tom, my boys go in and come out of fires. I will always have their backs.” And the entire time he taught them, outside of a few scratches, he was true to his word.

Tony’s boys turned into fine young men who are a tightly knit group that will be there for each other in all things good and evil. They are men; faults and all: but there for each other. There is also a strong bond with all of his friends which of course include women as well, but it is this group of guys he has known all of his life that I have watched grow right along side of him. They all play a role within society, and this does not surprise me. Military, EMS, Police, Fire Department, Linemen, Post office and more—–they connect and watch over all of us.

I write a lot about diabetes. It has changed our lives and impacted us beyond anything anyone could have ever imagined. When my younger two children were diagnosed; along with Jill, someone else was there thorough all of it also. A lot of attention is given to our children with diabetes; we tried to do what we could to balance those scales with TJ, who does not. It’s tough to be ‘the child without diabetes’ in the attention category within a family unit.

He is 27 today. He bears my first and last name. I am so proud of him and everything he does. Happy Birthday son. I love you bunches.

“Hi mom, dad……it’s a boy. We had a boy. Thomas James and we will probably call him TJ. Yes, mom and baby are doing great. Yes, he weighed………………………….”

What is your favorite diabetes phrase or word? You know the one you saw and made you say, now that says it all. One of my favorites…….and it may be taken as a tad crude by some, I guess and I apologize in advance, but I just love the word “diabadass”.

It is an edgy word that tells you the person is taking no defeat, grabbing diabetes and dealing with it and is taking no prisoners when it comes to diabetes. I just love it. And PLEASE if there is ONE PERSON who deserves the credit for this word—please stand up and take a bow. 🙂

One word. One phrase. Over the years, what has been your favorite and if need be; please explain why.

We have all heard THAT phrase at one time or another. “Why can’t I be like other kids?” It goes through us like a sword, doesn’t it? Sometimes it is followed by tears, sometimes a hug, we stay strong.

We die a little on the inside also, don’t we?

We have addressed this issue two ways over the years. The first is that Kaitlyn was not ‘excluded’ from ANYthing. We made sure that if her classmates did something, so did she. Usually we were asked this question (which was not a lot by any means but certainly it was asked and certainly tears were shed) during a blood check or a shot (before pump days). When we were asked, we went through all of the things that Kaitlyn did, just like the other kids.

Everything.

We would always add an incident that made us laughed together also. And we would give her a little tickle and say “…..remember when we laughed at when daddy wore those silly Easter Bunny ears with you? Remember that picture.”

She would smile and we would close by saying; “…it is very important that you get to do these things just like everyone else. And we have to manage your diabetes (we used that word, manage–from day one so she would know it. We explained each time until she grasped it, what it meant.) so we can do what you can to try to make sure you don’t feel groggy like when you are low. The phrase changed as she got older.

Over the years, we heard that people used different phrases; ‘God made you sweeter than the rest” and other phrases. If it works for you that is fine but know that at some point, you have to start educating your child. We decided to do it from ‘the get-go’. We also pointed out that people are all different for many reasons; but after a while it was clear to us that we could not reference diabetes like the color of ones hair being different from others. So we decided to always make it about choices and that to do all of the exciting things that life had in store for her, she needed to make sure her diabetes was managed.

We made it about a choice she would have to make. And she did. We would ask her if she wanted to continue to help us manage her diabetes so she could also continue doing what all the other kids were doing. And this worked most of the time.

When it was a day that was just too much; we held her. It did make it a bit easier because I too have been dealing with a chronic disease since my teens. It is not the same as diabetes but I have to carry my meds with me at all times. So it was easier to say; “Just like daddy always has his meds you need to make sure you have yours with you.” This helped a lot also.

It was very important that our tone was always such that was an explanation. Not a big fuss and a major deal, IMPORTANT but something to deal with and take care, and move on to the busy day ahead. When she was interviewed when she was 9 while the news station was following her when she went on the pump, she said something that, again, would change my life. During the interview she said, “I have diabetes, diabetes is not who I am.”

Unless you have been somewhere else for the last few days, and NOT online, you have been missing one of the truest forms of viral online frenzies, ever. It’s awesome.

Or to be more correct; Mr. Awesome.

Mr. Awesome is an online campaign in honor of North Miami’s Calder Sloan, a 7-year-old human-dynamo who lost his life very recently when a faulty light in their family swimming pool electrocuted him. His father’s nickname for him was Mr. Awesome. Calder created a self-portrait and after his death; the photo has gone viral….very, very viral. Now I do not believe that “Mr. Awesome” had diabetes and the world we live in is not always about diabetes…..but I do know that this community, our community, likes to help; so here is the chance to do something good.

My friends Luca and his wife Tammy are good friends of the family and I promised them I would help continue the word. Here is what you do: You print out the picture and take a selfie with the picture included and post it on Luca’s FB page at:https://www.facebook.com/luca.palanca?fref=ts
or you can also use #MrAwesome on all forms of online outreach.

This family is being extremely comforted by this effort and his family is using the loss to help others understand the loss and to help Calder’s school. His father’s incredible interview is below and he speaks of Calder and his success in changing the world as something “…Calder is, not was….”http://www.youtube.com/watch?v=bfCK3B6o3Qs

Here is a copy of Calder’s self-portrait. Print it out, take a picture, and post it on Luca’s page or use the hashtag. This is a simple one…..let’s help this family during this incredible time of grief.

It was a Monday. I was the Director of the (at that time) JDF (now JDRF) Long Island Office. For a chapter that was not in a major city, we were hugely successful with one of the most successful chapters in the country. The volunteers (and many, now, lifelong friends) were hugely dedicated, driven, and determined to make a difference. And did!
There were no FB pages, internet, instagram, twitter, or cell phones in everyday use. We called each other on the phone. Pumps, five-second glucose readings, CGMs—no, not yet; and a new building was opening in Florida called the Diabetes Research Institute—all showed promise. Good things were ahead in the diabetes world.

Stacy came into the office Friday, I had drafted a letter (for/from her) that was being sent to a group playing at Jones Beach in an upcoming appearance in their concert series. She wanted them to say something about diabetes in their upcoming concert. I drafted the letter and while her mom leaned on the horn for her to hurry up; Stacy ran in, looked at the letter, and stated she would come in Monday to ‘fix it’. Stacy never walked anywhere, she flew. Her energy was incredibly infectious and always, the future-pediatrician-planned-high-school-student would say, something more could be done. Her name suited her; Stacy JOY. She was a direct young lady and called them as she saw them. An old man of 35 was not going to cut-it writing a letter for a 17-year-old young lady. She would fix my draft on Monday

Back to the day-Monday, April 25th 1994: I asked Hedda (our administrative assistant) to call Jane (Stacy’s mom and Co-President of the Chapter) and find out what time she and Stacy would be in later in the day. A few short minutes later I heard screaming and wailing that was so deafening that I remember to this day as real as ever. Hedda could not control herself; Stacy was gone.

I was at ‘this diabetes thing’ for just a year and half. Gone? What do you mean gone? Now, again, remember there was no instantaneous….anything; twenty years ago. I had heard people could die from diabetes, and I was sure it may have happened……somewhere. But here it was, right next to me.

The earth shattered that day. It woke me up to something I could never have expected and it changed my life forever. This ‘dying’ was just not acceptable to me. As the world became more and more connected, I would hear, with more frequency, that this could happen and does happen; rare as it is but still just as unacceptable as it was twenty years ago.

The result of that day would change the diabetes world forever because Stacy’s dad, Marc, along with his wife Esther and two good friends would begin a journey that would include funding diabetes causes, building a cabin at Stacy’s diabetes camp, and begin a worldwide search to find their best hope for a cure.

After, literally, a world-wide search they decided that the Diabetes Research Institute was worthy of their time and resources. The next few years would establish the DRI as a worldwide powerhouse in research to cure type one diabetes once and for all. Marc, and their Stacy Joy Goodman Memorial Foundation would give millions of dollars and all four of them would become board members with, for a time, seeing Marc as the National Chairman. The research for a cure never moves fast enough but under Marc’s tenure the DRI would become a worldwide powerhouse of collaboration to the one goal of curing type one diabetes.

Marc’s efforts would lead to the hope for so many of us that a cure could be possible. His efforts continue today. He will be the first to tell you the long list ahead of him deserving of the credit; but that’s Marc. The apple did not fall far from the tree.
In all of the years since that April 25th, I constantly remind myself of this incredible family and their unyielding efforts to change the world. If they work so hard with only a memory to continue; who are we not to give that much more who have so much more to gain. We cannot live in this fear but respect it. It is there but should not control us. We must LIVE.

And when the band New Kids on the Block played their venue in 1994, before one of their hits, they announced they were dedicating that song to the life of Stacy Joy Goodman.

It is in the living we move on……….to this day and until a cure, because Stacy wanted it that way, she lived that way, that is how I will go about it.

(Disclosure: I work at the Diabetes Research Institute Foundation—-but as I have stated a million times; if anyone knows someplace better where all forms of research happen in one building, collaboration is how they operate, and they have the single-minded focus to cure diabetes—-let me know because I would give my energy there instead)

When is enough, enough? It just seems to me that the resilience and positive-ness of our kids gets tested time and time again………and again. Our kids, sometimes, seem to bounce-back from almost anything. I once wrote an article that referenced the fact that all of the accomplishments are our kids have done, always seem to come with an asterisk; because they accomplished whatever they did, all while having diabetes.

That is an important fact to remember while they achieve such wonderful things in their lives but there is a flip-side to this as well. Unfortunately, the flip-side can also impact their blood sugar as well as their psyche.

I am speaking of more than getting through the flu, or an illness that comes and goes. I am speaking of hardships. We must always remember that the hardships our children go through also come while they are dealing with diabetes. Spouses/partners should know this about their mates with diabetes as adults as well.

The loss of a job, the operation that goes wrong, the miscarriage, getting ‘cut’ at tryouts in school, school-in-general-and-everything-that-goes-with-it, dealing with a death or tragedy, failing at something, being diagnosed with an additional ailment (celiac jumps out at me but there are more), and anything else that is part of life–for those with diabetes is different from those without.

The impact is different, the caring for is different, and we (all of us who care and love those who have diabetes) must be cognizant of this fact…….always.

“ I’m so sad reading these ignorant comments. No one as a country we suck when it comes to………”

“What a sad world & pitiful society.”

‘……… and it is your right to cover your face if you can’t deal.”

“She was in her car waiting for police to arrive the article states. Would the officer rather she…….”

“Your insensitivity is exactly what I am talking about (name of person), thank you for demonstrating for me.”

These comments were taken from a FB conversation last night. Do the comments look familiar? Diabetes? No. They are all regarding breast-feeding in public. The point is that there are many, many issues in the world; many, many great voices out there; and many, many worthwhile causes.

Click this picture to see highlights about a conference that any and every young adult SHOULD NOT MISS. Students With Diabetes (www.studentswithdiabetes.com) is dedicated to creating a community and connection point for young adults with diabetes ages 18-30 on both college campuses and in local communities across the country. The national network includes education, programs and opportunities for young adults living with diabetes to facilitate their transition into this life stage and help foster personal, social and professional development to ensure a successful life with diabetes. Students With Diabetes was created as part of the Bringing Science Home project of USF Health, directed by Nicole Johnson, and supported by a generous gift from The Patterson Foundation. (Supplied from their website).

Every year SWD holds their annual conference. The 2014 Students With Diabetes National Conference will be held in Tampa, Florida from Friday, June 6 through Sunday June 8, 2014. They have created an amazing schedule highlighting the latest in technology, research, great speakers who will help us learn new ways to manage our diabetes and many opportunities to connect with other young adults living with T1D and have lots of fun.

Just $95.00 pays for the conference, the hotel, most of your meals, and I hear through the grapevine that actor Jim Turner is giving his one man show (an incredible event that will make you howl, gasp, and realize YOU ARE NOT ALONE—Jim has T1 and he calls it EXACTLY how it is). Jim Turner’s one man show is a must-see for anyone living with diabetes.

If this is YOU:
* Young adults living with diabetes between the ages of 18 and 30(ish)
* Type-3′s or the significant others, friends or family members (ages 18-30(ish)) of a person living with diabetes
* Young adults living with diabetes that want to network with other T1D’
* Young adults living with diabetes that want to learn about the latest diabetes research and technology
* Young adults living with diabetes that want to new and unique ways to manage their diabetes
* Young adults living with diabetes that want to have fun in a safe environment

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This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.